BEGIN:VCALENDAR VERSION:2.0 PRODID:-//VHL Alliance - ECPv6.13.2.1//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:VHL Alliance X-ORIGINAL-URL:https://vhl.org X-WR-CALDESC:Events for VHL Alliance REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20230312T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20231105T060000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20230302T190000 DTEND;TZID=America/New_York:20230302T200000 DTSTAMP:20260619T000250 CREATED:20230123T203835Z LAST-MODIFIED:20230124T180317Z UID:10000013-1677783600-1677787200@vhl.org SUMMARY:New Patient / Caregiver Cohort Program DESCRIPTION:  \nRecently diagnosed? Join us for our four week New Patient Cohort! This program will allow you to… \n  \n\nMeet other VHL patients and caregivers and developed a personal support network\nLearn more about VHL disease from VHL experts\nLearn about the VHL Surveillance Guidelines and why they are important\nLearn about the importance of VHL-experienced clinical care and the CCC program\nLearn about resilience\, how to practice self-care and where to find support\nLearn how to be a better self-advocate and share your story\nLearn where to find available VHLA and external resources\nLearn how to get involved with VHLA and contribute to the VHL community\n\n  \nWeek 1 (February 23rd) – Welcome and What is VHL? \n\nWelcome and introductions\nVHL 101 and Research Discussion\n\n  \nWeek 2 (March 2nd) – Self-Care\, Self-Advocacy\, and Support \n\nWhat is self-care and why is it important?\nDealing with Stress and Anxiety\nFacing adversity and fostering resilience\nBeing a self-advocate\n“Elevator Pitch” – Communicating with those around you\n\n  \nWeek 3 (March 9th) – VHL Veterans Panel \n\nPanel discussion with VHL patients – “Ask the VHL Veterans”\n\n  \nWeek 4 (March 16th) – Available Resources and Getting Involved \n\nHow to find available resources\nVHLA resources\nExternal resources\nVolunteer opportunities\nUpcoming Events\nFeedback\n\n  \n  \nRegister Here URL:https://vhl.org/vhla-event/new-patient-cohort-program/2023-03-02/ LOCATION:Zoom / Online CATEGORIES:Workshop ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/new-patient-cohort-image.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230306T200000 DTEND;TZID=America/New_York:20230306T210000 DTSTAMP:20260619T000250 CREATED:20230210T163247Z LAST-MODIFIED:20230215T194902Z UID:10000018-1678132800-1678136400@vhl.org SUMMARY:March VHL Patient/Caregiver Call DESCRIPTION:First Monday of every month. \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \nIf you would like to join the call list\, please fill out the form below. \n  \n\n\n\n\n\n\n* indicates required\n\n Email Address *\n\n \n \n\n\n First Name *\n\n \n \n\n\n Last Name *\n\n \n \n\n\n\n Address \n \n \n\n Address Line 2\n \n \n\n\n City\n \n \n\n State/Province/Region\n \n \n\n Postal / Zip Code\n \n \n \n\n Country\n USAAaland IslandsAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntigua And BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Saint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandColombiaComorosCongoCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuracaoCyprusCzech RepublicDemocratic Republic of the CongoDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuyanaHaitiHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJersey (Channel Islands)JordanKazakhstanKenyaKiribatiKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMoldova\, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNepalNetherlandsNetherlands AntillesNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth KoreaNorwayOmanPakistanPalauPalestinePanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarRepublic of KosovoReunionRomaniaRussiaRwandaSaint Kitts and NevisSaint LuciaSaint MartinSaint Vincent and the GrenadinesSamoa (Independent)San MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth KoreaSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan Mayen IslandsSwazilandSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTimor-LesteTogoTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks & Caicos IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUruguayUzbekistanVanuatuVatican City State (Holy See)VenezuelaVietnamVirgin Islands (British)Virgin Islands (U.S.)Western SaharaYemenZambiaZimbabwe\n \n\n\n Phone Number \n \n \n\n\n What call would you like to join? \n\n\n \n Patient / Caregiver Call\n\n\n \n Parents of VHLers Call\n\n\n \n Low / No Vision Call URL:https://vhl.org/vhla-event/march-vhl-patient-caregiver-call/ LOCATION:Zoom / Online CATEGORIES:VHL Patient/Caregiver Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/patient-cg-call.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230308T193000 DTEND;TZID=America/New_York:20230308T203000 DTSTAMP:20260619T000250 CREATED:20230210T163148Z LAST-MODIFIED:20230324T153918Z UID:10000017-1678303800-1678307400@vhl.org SUMMARY:March Low/No Vision Call DESCRIPTION:Second Wednesday of every month \nLiving with low or no vision creates unique challenges for VHLers. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \n \n\n\n\n\n* indicates required\nEmail Address *\n\n\n\nFirst Name *\n\n\n\nLast Name *\n\n\n\n\nAddress \n\nAddress Line 2\n\n\nCity\n\nState/Province/Region\n\nPostal / Zip Code\n\n\nCountry\nUSAAaland IslandsAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntigua And BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Saint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandColombiaComorosCongoCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuracaoCyprusCzech RepublicDemocratic Republic of the CongoDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuyanaHaitiHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJersey (Channel Islands)JordanKazakhstanKenyaKiribatiKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMoldova\, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNepalNetherlandsNetherlands AntillesNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth KoreaNorwayOmanPakistanPalauPalestinePanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarRepublic of KosovoReunionRomaniaRussiaRwandaSaint Kitts and NevisSaint LuciaSaint MartinSaint Vincent and the GrenadinesSamoa (Independent)San MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth KoreaSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan Mayen IslandsSwazilandSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTimor-LesteTogoTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks & Caicos IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUruguayUzbekistanVanuatuVatican City State (Holy See)VenezuelaVietnamVirgin Islands (British)Virgin Islands (U.S.)Western SaharaYemenZambiaZimbabwe\n\nPhone Number \n\n\nWhat call would you like to join? \n\n\nPatient / Caregiver Call\n\nParents of VHLers Call\n\nLow / No Vision Call\n\n  URL:https://vhl.org/vhla-event/march-low-no-vision-monthly-call/ LOCATION:Zoom / Online CATEGORIES:Low/No Vision Monthly Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/low-no-vision-call.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230309T190000 DTEND;TZID=America/New_York:20230309T200000 DTSTAMP:20260619T000250 CREATED:20230123T203835Z LAST-MODIFIED:20230124T180317Z UID:10000014-1678388400-1678392000@vhl.org SUMMARY:New Patient / Caregiver Cohort Program DESCRIPTION:  \nRecently diagnosed? Join us for our four week New Patient Cohort! This program will allow you to… \n  \n\nMeet other VHL patients and caregivers and developed a personal support network\nLearn more about VHL disease from VHL experts\nLearn about the VHL Surveillance Guidelines and why they are important\nLearn about the importance of VHL-experienced clinical care and the CCC program\nLearn about resilience\, how to practice self-care and where to find support\nLearn how to be a better self-advocate and share your story\nLearn where to find available VHLA and external resources\nLearn how to get involved with VHLA and contribute to the VHL community\n\n  \nWeek 1 (February 23rd) – Welcome and What is VHL? \n\nWelcome and introductions\nVHL 101 and Research Discussion\n\n  \nWeek 2 (March 2nd) – Self-Care\, Self-Advocacy\, and Support \n\nWhat is self-care and why is it important?\nDealing with Stress and Anxiety\nFacing adversity and fostering resilience\nBeing a self-advocate\n“Elevator Pitch” – Communicating with those around you\n\n  \nWeek 3 (March 9th) – VHL Veterans Panel \n\nPanel discussion with VHL patients – “Ask the VHL Veterans”\n\n  \nWeek 4 (March 16th) – Available Resources and Getting Involved \n\nHow to find available resources\nVHLA resources\nExternal resources\nVolunteer opportunities\nUpcoming Events\nFeedback\n\n  \n  \nRegister Here URL:https://vhl.org/vhla-event/new-patient-cohort-program/2023-03-09/ LOCATION:Zoom / Online CATEGORIES:Workshop ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/new-patient-cohort-image.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230316T190000 DTEND;TZID=America/New_York:20230316T200000 DTSTAMP:20260619T000250 CREATED:20230123T203835Z LAST-MODIFIED:20230124T180317Z UID:10000015-1678993200-1678996800@vhl.org SUMMARY:New Patient / Caregiver Cohort Program DESCRIPTION:  \nRecently diagnosed? Join us for our four week New Patient Cohort! This program will allow you to… \n  \n\nMeet other VHL patients and caregivers and developed a personal support network\nLearn more about VHL disease from VHL experts\nLearn about the VHL Surveillance Guidelines and why they are important\nLearn about the importance of VHL-experienced clinical care and the CCC program\nLearn about resilience\, how to practice self-care and where to find support\nLearn how to be a better self-advocate and share your story\nLearn where to find available VHLA and external resources\nLearn how to get involved with VHLA and contribute to the VHL community\n\n  \nWeek 1 (February 23rd) – Welcome and What is VHL? \n\nWelcome and introductions\nVHL 101 and Research Discussion\n\n  \nWeek 2 (March 2nd) – Self-Care\, Self-Advocacy\, and Support \n\nWhat is self-care and why is it important?\nDealing with Stress and Anxiety\nFacing adversity and fostering resilience\nBeing a self-advocate\n“Elevator Pitch” – Communicating with those around you\n\n  \nWeek 3 (March 9th) – VHL Veterans Panel \n\nPanel discussion with VHL patients – “Ask the VHL Veterans”\n\n  \nWeek 4 (March 16th) – Available Resources and Getting Involved \n\nHow to find available resources\nVHLA resources\nExternal resources\nVolunteer opportunities\nUpcoming Events\nFeedback\n\n  \n  \nRegister Here URL:https://vhl.org/vhla-event/new-patient-cohort-program/2023-03-16/ LOCATION:Zoom / Online CATEGORIES:Workshop ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/new-patient-cohort-image.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230320T200000 DTEND;TZID=America/New_York:20230320T210000 DTSTAMP:20260619T000250 CREATED:20230123T193222Z LAST-MODIFIED:20230324T153910Z UID:10000010-1679342400-1679346000@vhl.org SUMMARY:March Parents of VHL Patients Call DESCRIPTION:Third Monday of every other month. \nPlease join us on the third Monday every other month to discuss how we can help our children thrive with VHL. \nAll parents of VHLers are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \nThis facilitated call takes place on the third Monday of every other month at 8 PM ET. If you would like to join the call\, please fill out the form below. \n  \n\n\n\n\n\n\n* indicates required\n\n Email Address *\n\n \n \n\n\n First Name *\n\n \n \n\n\n Last Name *\n\n \n \n\n\n\n Address \n \n \n\n Address Line 2\n \n \n\n\n City\n \n \n\n State/Province/Region\n \n \n\n Postal / Zip Code\n \n \n \n\n Country\n USAAaland IslandsAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntigua And BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Saint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandColombiaComorosCongoCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuracaoCyprusCzech RepublicDemocratic Republic of the CongoDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuyanaHaitiHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJersey (Channel Islands)JordanKazakhstanKenyaKiribatiKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMoldova\, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNepalNetherlandsNetherlands AntillesNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth KoreaNorwayOmanPakistanPalauPalestinePanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarRepublic of KosovoReunionRomaniaRussiaRwandaSaint Kitts and NevisSaint LuciaSaint MartinSaint Vincent and the GrenadinesSamoa (Independent)San MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth KoreaSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan Mayen IslandsSwazilandSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTimor-LesteTogoTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks & Caicos IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUruguayUzbekistanVanuatuVatican City State (Holy See)VenezuelaVietnamVirgin Islands (British)Virgin Islands (U.S.)Western SaharaYemenZambiaZimbabwe\n \n\n\n Phone Number \n \n \n\n\n What call would you like to join? \n\n\n \n Patient / Caregiver Call\n\n\n \n Parents of VHLers Call\n\n\n \n Low / No Vision Call URL:https://vhl.org/vhla-event/parents-of-vhlers-call-march/ LOCATION:Zoom / Online CATEGORIES:Parents of VHL Patients Call ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2023/01/parents-of-vhlers-call.jpg END:VEVENT END:VCALENDAR